My opinion on the Social Care chaos…….

Following the short debate we pre recorded for the BBC’s Victoria Derbyshire programme, it became clear to me that, when I’m on telly, I simply repeat the words I’ve said a thousand times, as they’re stored, waiting to be retrieved at appropriate moments. Whereas I couldn’t think of a good response to the social care issue as I didn’t have time to think through the question.
That’s why I’m useless on policy groups as I don’t have time to ponder before the meeting is up.

However, after recording the programme, I must have come up with some opinions in my sleep, as so often happens. Now I can’t write well nowadays, so it’s a real challenge to decipher post it notes, written in my sleep, but I know my writing well enough to make sense usually, as happened the morning after…..…

I didn’t come away from the pre record with a particularly good feeling about the programme we recorded and which was shown yesterday. It was wonderful to have such a diverse selection of people present but I felt there were too many to make a sound impact for the time allowed. It felt like the message was watered down and flat. It’s almost a shame it wasn’t 2 programmes, one which concentrated on our film and the changes that had taken place in the last 3 years, which would have led nicely onto a programme about Social Care and provision, especially ahead of the Green paper on Social care. But at least they DID devote a decent amount of time on this wonderful programme.

For so long, in this country, we havn’t talked about the complexity of the individual living with dementia. The ‘need’ for support and services has been ignored and thought of as the realm of charities and this is one of the main reasons for the chaotic state of social care at present.

For so long people with dementia have been shoe horned into the general services which others believe is our need instead of individually assessing need. Now we’re beginning to rise in numbers and TALK in public, there’s a realisation of the individuality of ‘need’ – we don’t all ‘fit’ into current services provided.

It’s almost as if it’s too late for all those of us currently living with dementia, both in the early mid and late stages and all stages in between. It feels like we’re the guinea pigs being used to try to sort out this mess so future generations can benefit.

If everyone currently living with dementia, in whatever stage, has to be guinea pigs for change to happen, then so be it, but change there has to be. No more silence, no more voices of the few, no more talk and good intentions – there has to be actions.

In the next 5 years huge social care change must take place so that in 10 years time, we’re proud of what the country has in place. People living with cancer aren’t shoe horned into inappropriate treatment, those recovering from a stroke aren’t shoe horned into inappropriate treatment….so why are people with dementia? Dementia lags behind in medical innovation so the need for social transformation is greater.

We don’t have innovative medical procedures to follow or a plethora of choice on medication because research has been sadly underfunded so the need for social transformation is greater. In my mind this should naturally lead clinicians to use social prescribing instead of automatically looking at the medical model and then discharging us.

No more silence and ‘making do’. We need to be realistic though and also examine various ways to fund this enormous need – what should and shouldn’t be funded – as we all know there is no infinite money in the pot.

Yes it is a daunting job to transform social care, but then surely it was a daunting job to create the NHS in the first place, but it happened.

Wouldn’t it be wonderful if social care was a job of choice, with recognition, status, and a value placed on the skills of the staff?
Wouldn’t it be nice if individuals were treated as simply that, individuals with individual needs?
Wouldn’t it be nice if policy makers actually listened to the people that mattered and had most knowledge?

Which beggars the question, ‘Who is responsible and who should be involved in this massive transformation’? Well, only people who truly understand the problem and a large proportion of whatever group is set up should be made up of people with dementia, supporters, experts from the likes of Innovations in Dementia, TIDE, who are not afraid to stand up to policy makers – non negotiable and paid appropriately. Real people with real knowledge, real experience, along with the few policy makers who can make it happen but who LISTEN, MAKE NOTES, and put into ACTION.

But not me, as sadly my brain doesn’t engage quick enough in meetings, but the likes of Nigel, Chris, Jayne, Ming Ho, Philly Hare and Jean Tottie would be ideal and the likes of me, consulted by them, in order to give us time to think eons later…

Wish my brain had thought and spoken all that my hands had just typed……

You can watch the programme on the link below. The first bit including our film is 15mins in to 34mins and the discussion on the second part to be found at 1hr 12mins in to 1 hr 44. Apparently they had literally thousands of emails and txts during and after the show. Special thank you goes to their reporter, and now our dear friend, Jim Reed who made it all possible.

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About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget.
I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition.
What I want is not sympathy. What I want is simply to raise awareness.
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24 thoughts on “My opinion on the Social Care chaos…….”

Perfectly said Wendy and my thoughts exactly. Can I copy the paragraph
“In the next 5 years huge social care change must take place so that in 10 years time, we’re proud of what the country has in place. People living with cancer aren’t shoe horned into inappropriate treatment, those recovering from a stroke aren’t shoe horned into inappropriate treatment….so why are people with dementia? Dementia lags behind in medical innovation so the need for social transformation is greater.” and paste a link onto my Facebook and Twitter feeds? An interesting observation. When I post something regards a daily outing, the snow or similar I get 20 or so likes and some comments but if I refer to dementia I’m lucky to get single figures and usually those are from folks who have “been there” caring for someone. The more we shout just maybe we will be listened to xxx

Just started reading your book in preview. Such a great read. Am more than impressed with you Wendy. It is such an intelligent, provoking, thoughtful presentation. Not only of this disease, but our roles in life itself. So much is taken for granted and not embraced. You have a fan in me!

I saw the Victoria Derbyshire programme yesterday and thought it was excellent. I thought you were excellent too, Wendy, so you don’t need to feel that you were not at your best. I thought Victoria D. chaired the whole thing with enormous skill, respect and sensitivity. I for one certainly came away with a much better understanding of dementia.

Hello Wendy, I watched it yesterday, you all did so well. It was great to get the air time, but like you I am getting frustrated as progress is slow. People talk and yet no progress. It is so shortsighted as costs can be saved for the NHS and social care and improved lives for those affected if only they plan better. Something has to be done soon. Martin x

I thought you all did brilliantly. I agree not enough time was devoted to it, but TV is increasingly becoming just sound bites 😦 But I’m sure it will have helped a lot of people gain greater understanding of the condition and encouraged them to look for more information. Keep up the good work!! xx

hi wendy it was lovely to meet you on wednesday at Leeds Dept’ of Health. I agree with you that we will have to “wait and see” if they have taken anything on board about social care. I missed the Victoria interview on the BBC , but hopefully i can watch it on catch up. I have seen on Twitter that a nurse in Rutland is going to launch Admiral nurse clinics in GP surgeries in Rutland. So my idea of having Dementia clinics is already being trialed. Lets hope this takes off and is rolled across all GP surgeries. Now ive found your blog I will follow you with interest, as long as I remember how to find it!!!!! Pam ( from the Green paper meeting)

Wendy I think your blog should go to everyone on the programme I’m sure Jim could do that, I will certainly pass it onto as many as I can. You have put into words everything that so many of us feel. I think the programme helped a lot of people understand more, so even if you felt flat it has raised interest. You have written a remarkable piece which I know will be passed on to those who can make action happen x huge thanks to you x

I’ve just watched Victoria Derbyshire’s programme and you did very well.It was interesting to hear the views of different people but the unanimous opinion was that there needs to be positive action now.

Dear Wendy. A wonderful blog – you’ve managed to cover all the most important aspects of the lack of social care and support in one fell swoop! I’m sure too that many people would have appreciated VD’s programme. But as always happens – not enough time to delve deep into discussion on how to tackle the huge problems and unfairness of today’s care of PWD and their carers. Carry on with the good work!

I agree with all previous replies. Yes, the media is mostly interested in sound bites with few in-depth details, enough to grab the interest of the audience and keep it. So many stories are huge headlines with previews that make you want to watch. Yet the deep down individual awareness is often missed. It is true dementia is grouped, housed and mostly forgotten by the busy world. It pains me to know what my mother endured at the hands of others. All the while she did not speak up until it was too late. She died of a broken heart in a cheaply run home where she had been tie down. It is hard but I have to face what ignorance of her condition that prevented me from helping her. I believed her when said everything was OK, but it wasn’t. This is painful to talk about as the reality of her last years and how little I did to help her will be with me always. You are a strong woman and please feel free to speak your mind. I will listen as will thousands of others and it will spread as strong people everywhere stand up and take the reins. You have educated me so much I did not realize how ignorant I was until I found you. The same has to be true for so many others that you don’t hear from but read and ingest your words to spread to others and see with clear eyes the truth. What you have taught and brought affects every living human in the world no matter what age. From babies to grandma’s we all reach a point where this issue will affect us. I also believe you have helped many this day to look closer at the treatment of their dementia relatives and others giving new thought to this so far ignored an issue. Just lock them up until they die, what do they know anyway. Thank you for your sacrifices to do this for the world.

In my experience one nub of the problem is that any services that exist (and there is SO little) are aimed at people who are physically incapacitated or inactive (and, often, accepting of their dementia to some degree). For a physically fit and active person who cannot accept (is not even aware of) their dementia nothing is provided. Bespoke privately paid for one-to-one companionship is the only thing that works but we can only afford that because I have a good job and we are very lucky to have found such good people. Many (most?) people couldn’t?

Wendy, please don’t ever underestimate the wonderful job you are doing in raising the needs and profile of those living with dementia. You are one of the pioneers making sure that the subject of dementia is not brushed under the carpet anymore. You are forcing it up the agenda and encouraging others to also raise their voices. Every time your book is sold or you appear on the radio or TV the message continues to get out there and eventually the changes you seek will come about as more and more energy and momentum gets behind the issue. You are inspiring myself and many others to do what we can do in our own small way. My small contribution is taking music and movement into care homes. I am working increasingly with those living with dementia and would love to meet you for a coffee one day or invite you to join me in one of my sessions to advise what improvements I can make to improve this experience for everyone. I appreciate how busy you are and do of course understand if you need to focus your energy elsewhere. I work in the East Riding. Whether we meet or not thank you so much for all you are doing. You’re inspirational xx